Category: Baby loss

You may feel like the pain is unbearable, that the pain is going to crush you, that the pain is too much.

You may feel like your life has ended. That you do not want life to carry on.

I understand. I have been there.

My son Hugo died at the age of just 35 days. He had been born when I was 24 weeks’ pregnant, my first and so far only child.

Each one of those 35 days is so precious, but not enough.

No amount of time can ever be enough.

While your life has not ended; you continue to exist, your life as you knew it has ended. The end of innocence. The harsh realisation that bad things happen in life – and not just to other people.

Bad things happen to you, too. No one is immune.

We evolve during the course of our lives, of course. But grief changes you: suddenly, abruptly, shockingly.

Your relationships may change: some for the better, others for the worst. You are likely to discover that the old adage about seeing the best and worst of people during times of crisis is true.

Some people – even those previously closest to you – may not know how to deal with your changed relationship. The changed you. Most will want to do all they can to help you but because they do not know what to do for the best may blunder, put their foot in it, utter endless platitudes, and when tempers get frayed make you feel as though you are at fault.

The knowledge that the blunders are well-intentioned is unlikely to make you feel any better. It may feel like constant salt in the wound.

Me and Hugo enjoying a cuddle.

So much of your pain cannot be expressed in words. What you may want most of all is someone to sit with you as you cry or stare into space. Someone to understand that you don’t know how to express your emotions. That sometimes, the power behind those emotions scares you. That you think the pain will never ever end.

But many people are uncomfortable with silence. People may want to talk at you, want to tell you about their own experiences of bereavement. Or they may want to tell you what they think you should do. They want to make you ‘better’, not realising life will never, ever be better. You may well sit their patiently waiting for them to shut up – but it is fine to ask them to stop talking, too.

People may not mention your child’s name, worried it may upset you but failing to appreciate that not mentioning them upsets you more – and after all, the worst has already happened.

People may not want to talk about your child with you, filling you with frustration. They were your beautiful, perfect child who you grew and love with every cell of your being, now and forever more. You want to talk about them, how proud you are of them, irrespective of the time you spent with them. This reticence from other people may lead to resentment.

It may lead to a feeling of isolation. A feeling that it may, as a consequence, be better to avoid certain people, certain places, certain situations not because you want to, but because you need to protect yourself from further hurt.

The knowledge that you are now ‘different’.

That is enough negativity for now. As I said, you will see the worst in people – and the best, too. The kindness of people can know no bounds. Compassion, empathy, the compulsion to reach out and help – the help you need, not what they think you need.

Those who will sit with you as you cry, as the cascade of tears fall, holding your hand and passing endless amounts of tissues..

And those people can often come from places you least expect; relationships can take on a new depth, friendships and acquaintances can be strengthened, new friendships forged often with strangers with whom you may now share a common experience.

Those who share the common experience, those who ‘get it’ are invaluable. It often does not matter if you have never met them, it does not matter if their child died in circumstances that are completely different – they understand. You may find you have a certain shorthand with them, and not having to explain is liberating.

You may feel the value of liberation: grief is exhausting. It seeps in to your pores, into your bones. The simplest of tasks can seem challenging; your memory unreliable, turning even the smallest thing that makes your life a tiny bit easier into a precious gem.

You may feel like you will never be happy again, never smile again. Indeed you may feel like you do not want to be happy again, nor smile again – or that you deserve to.

The feeling of guilt can feel all-encompassing. The knowledge that rationally, you know you have no reason to feel guilty – that you did everything you could, and would have done more, if only, what if – is irrelevant.

I still feel like I failed my child. I did not keep him safe. Even though I know, rationally, if he had not been born when he was we both would have died.

Emotional torment.

And the anger – oh, the anger. So raw, so visceral. Anger at the world in general, at the hand life has dealt you, at the world being so bloody unfair. Anger at those who embellish and become melodramatic over trivial everyday annoyances (no, spilling your coffee is not the worst thing ever.)

Anger at those who seem not to appreciate their children, take them for granted. But in the same breath, thinking you are glad that other people are blissfully unaware of such heartbreak.

More than a year on after Hugo died, I have learned to feel happy again. It is a different sort of happiness than before. A happiness borne out of different priorities and perspectives.

But that does not mean that I am better, or that my life is better. No, not by a long shot. I still get bad, low, devastating days as a result of a trigger, or of nothing at all. Those days can make me feel like I am back to the beginning, back to the darkest days, all my progress out of the window.

I have to remind myself I am not back at the beginning, that it is the fault of the path of grief. Grief does not progress in a straight, orderly line. It is a mass of intertwined squiggles that make no sense, with no end.

And that is part of the reality. Grief has no end. There is no better, only different.

You may discover within you a strength you wish had lain forever dormant. That strength comes from intense love, intense pain, and it can take on the world.

I am not going to tell you what to do, how to grieve. I cannot do those things, because while we may share a similar experience in common our individual journeys are so very personal.

But I would like to share with you a few points that have worked for me, take them or leave them as you will:

One day at a time.

Don’t expect too much of yourself.

Whatever is right for you, whenever is right for you.

Find people you can trust to confide in, or just to listen.

Be open and honest with your partner about your feelings, no matter how much it may cause extra tears – you need to be honest so you can support each other.

Find a way to express your grief – whether that is drawing, writing (on a blog or in a private journal), talking to someone, raising money for a charity.

Try to be gentle to yourself, and take time for self-care. Grief is exhausting, meaning you need to find ways to recharge your batteries.

Take time for your grief – ignoring it does not make it go away (as I discovered to my cost).

Being selfish when you need to be is acceptable – often life after loss is about personal survival.

There will be days when just getting out of bed is an achievement – and there will be days where you feel you can take on the world.

Bad days can come from nowhere.

You are not a bad person. You deserve love and happiness, even if it may take time to return, take a different form and be fleeting.

Like this:

What a week! There are many lovely and exciting things to tell you about, dear readers.

But first, a moment of reflection. I’ve been distracted from my blog (I’ve really missed it!) and from my usual self-care techniques by some upsets with people about whom I care deeply. The upsets were on social media – as wonderful as social media is, misunderstandings are bound to happen from time to time. I’ve been at the receiving end a number of times and whenever the other person has apologised, I’ve acknowledged that while their comment hurt, I know it was unlikely to be intended and accepted their apology.

Anyway, this time my words were the cause of unintentional upset and for some reason my apology seemed to make it worse. To cut a long story short, I made myself physically ill with the stress of it all.

So, I am taking a step back and reassessing what is important in my life, and what I need to focus on. Firstly myself: I reminded myself of the very wise advice I wrote in this post. By trying to make other people happy, I wasn’t meeting my own needs – not by a long shot. I am who I am – candid, honest, enthusiastic and passionate about getting on and making change for other people’s benefit. I have a dry sense of humour, and with that I am kind, considerate, compassionate, and empathetic. I know I am a good person, I am happy with who I am and my motives for doing what I do.

My first step towards self-care was a lazy morning and a long cuddle with Fat Cat that we both thoroughly enjoyed.

The reason I mention this is the same as I mention anything on the blog – not to ‘pick on’ anyone or to make them feel bad, but to make a wider point about reflection and thinking differently. I am all about the bigger picture.

I am now doing my Taylor Swift dance, shaking it off and focusing on the positive. Ready? Let’s go!

Channelling the messages from my fab business cards (except for the ‘fat’ part, of course).

Work

My phased return to work continues to be much better than I anticipated, I am relieved to report. My manager and colleagues are wonderful; very kind and supportive, and understanding of my needs. Colleagues have welcomed me back, telling me I have been missed, and that they are glad to have me back. No one has pried, which has really helped me manage my feelings of anxiety and vulnerability.

Another huge positive is that I am helping lead a project about my great passion – patient experience. It’s really exciting, and it’s great to have something to feel excited about.

There is still a long road ahead of course, but so far so good.

Neonatal Parents’ Meeting

On Wednesday I went to London for a Neonatal Parent Advisory Group meeting. It was tough – there were tears from me – but such a constructive meeting. Sadly, the other parents who attended have also experienced loss; I appreciated being, for the first time, in a group of people who really ‘get it’. We are going to be working together to use the benefit of our experiences to help other families, which feels to me to be a privilege.

Maternity Strategic Clinical Network Meeting

That meeting was followed by attending this meeting to talk in front of around 100 people about Hugo’s Legacy, my involvement in #MatExp, and my experience of a Whose Shoes workshop as part of a presentation about the campaign and the pilot workshops.

Talking about Hugo’s Legacy and MatExp at a maternity Strategic Clinical Network conference.

Don’t tell anyone, but my week had been so busy I prepared my talk 30 minutes previously – I think I did alright. Lovely people came up to me afterwards to say Hugo’s story had really moved them, and I am also going to get involved with the work of the strategic clinical network to help shape better support for women who have similar experiences to mine.

I also really enjoyed the chance to have a face-to-face chat with #FabObs Florence Wilcock, after spending so much time communicating online. I have just realised we should have got a selfie!

Butterfly Awards

The wonderful Mel, who is behind the Butterfly Awards has invited me to give a speech inspiring other bereaved parents to share their stories, and to highlight why people need to put their temporary discomfort to one side and take the time to really listen to the stories. The invitation came about my latest #MatExp action, and I was honoured to be asked to and to accept.

I am also honoured to be shortlisted in the author/blogger category in the awards for the second year running. I know you will all be delighted to learn I’ll be asking you to vote for me again in a couple of months’ time!

My latest #MatExp action selfie

Other exciting things…

It’s naughty to tease I know…but I have been invited to some other things that I can’t tell you about yet, but I will as soon as I am able!

Self-Care

The kind people at Lumie have sent me a SAD and energy desk light to review – the idea is it helps prevent the slump that usually prompts me to hunt down some chocolate. I’ll be letting you know how I get on.

Most excitingly, I’ve been sent a colouring book to review! It’s a hard life, but someone has to put themselves out…and it’s a great reason to ensure sure I definitely make time for self-care.

I’ve also had my hair chopped. It had been getting shorter and shorter over the past year – the new ‘do is a braver version of the graduated bob I had last time. I love it – it is the perfect compromise between a bit of flattering face-framing length and hassle-free lack of length.

The new ‘do from the side.

Phew! Right, time for more self-care – and to make sure I have energy not only for the things I need to focus on, but BritMums Live too! I’m very excited to see all my friends.

Like this:

If you are on Twitter, please join #PNDHour on Wednesday June 3 between 8pm and 9pm. I will be co-hosting a chat about baby loss support. All welcome.

Hugo’s Legacy focuses on improving information and communication, especially for parents who have lost a baby. #MatExp is a powerful grassroots campaign that aims to identify and share best practice in maternity services across the country. I am so proud to be helping lead #MatExp; it is a chance to help #HugosLegacy make a real difference.

The #MatExp campaign has grown so much since its official launch at NHS Change Day in March 2015 it now has its own website to store all the ideas, activities and actions. The website has been a labour of love – I started building it only last Wednesday – (today is Monday!). It has been a wonderful example of group working and crowdsourcing with inspirational and passionate people.

June is a month of action for #MatExp, and people are being asked to share what their action will be by posting a selfie. Here is mine:

The loss of my son Hugo in March 2014 has affected me so profoundly my action focuses on bereavement support. Nothing could have been done differently in either my or Hugo’s care from a clinical perspective. However, better communication, especially at the end of Hugo’s life could have made an already heartbreaking situation less stressful. I have written previously of how the news about withdrawing Hugo’s treatment was given.

To compound that finding support to help us come to terms with our loss, was incredibly difficult to source, as I have written about in this post.

A recent discussion on the #MatExp Facebook page revealed that our experience is sadly not unique. The #MatExp community is writing blog posts to summarise the discussions and suggested actions.

The immediate action for bereavement support is one that can be done by anyone, anywhere, anytime – and costs nothing.

Acknowledge the baby the parents have lost. If you know the baby’s name, use it. If you don’t know the baby’s name, ask. Take the parents’ lead on whether or not they want to talk about their loss. Try not to worry about saying the ‘wrong’ thing. The worst thing you can do is to skirt around the subject, or ignore it completely. To ignore the baby is insulting and upsetting to bereaved parents.

Longer-term actions include:

Clear, concise, sensible, and up-to-date information to be provided to bereaved parents when they leave the hospital after the death of their baby. Parents need reassurance about the emotions they are likely to feel, and a few pointers about how to navigate grief, especially during the raw early weeks. The information also needs to clearly state how the parents can access appropriate support as and when they are ready.

Access to counselling support. Too many bereaved parents have had to fight for the counselling and psychological support they need – or have gone without. Some hospitals do offer counselling services: hospitals need to make clear to parents that this is available, and how to access it. Funding issues mean that not every area is able to provide these services, but charities thankfully do exist to fill the gap. Hospital and GP practice staff need to know what support is available locally so they can signpost parents appropriately, or where appropriate make referrals for them. Leaving bereaved parents to source their own support at a time when they are least able to have the tenacity to deal with ‘the system’ is unacceptable.

Training in bereavement care for health professionals. Surprisingly, many don’t receive this as standard practice. The vast majority of health professionals are caring individuals, but a lack of appropriate training means many are unsure about how best to deal with bereavement, which may lead them to saying things that are less than helpful to parents. What is said to parents at this sad time stays with them forever, so the importance of this training cannot be underestimated. This training should be extended to all staff involved with maternity/NNUs (including admin, housekeeping et al) to help prevent unnecessary upsets.

Debrief/support to care for the needs of maternity, obstetric and NNU staff after the death of a baby. These staff are deeply affected by the loss of a baby in their care.

For my own action, I am going to be continuing to encourage everyone – health professionals and the wider community – to talk about baby loss – #saytheirname.

I will do this by:

Continuing to talk openly and honestly about my own experiences on my blog, and on social media;

Continue to seek opportunities for giving talks to health professionals about Hugo and our story, and for writing guest posts on relevant websites to help health professionals learn from a first-hand experience;

Helping empower other bereaved parents to talk about their experiences, to help share good practice.

I have already made a start on the first of the longer-term actions: I created simple bereavement information for the NNU at St George’s, where Hugo was cared for and will be seeking opportunities to share this more widely.

In addition, I am writing a book about Hugo, and our first year after our heartbreaking loss.

Me and Hugo

Parents suffer enough when they lose a precious baby – anything that can help make life after loss a little bit easier is invaluable.

I shall be keeping you up-to-date with progress on #HugosLegacy, #MatExp, and #SayTheirName – watch this space!

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Yesterday was a bad day. Not for any particular reason. Grief can be lonely – even in a room full of people, fellow grievers say. Yesterday that loneliness, combined with anger, resentment and deep sorrow at being an empty-armed mother threatened to erupt.

Stumbling upon a post by a fellow mother with no living children was a huge relief. Her words really resonated with me.

This excerpt, about what it is like to live as a mother with no living children is especially poignant:

While you’re reading this I want you to take a moment to close your eyes and think of the moment you felt most unwelcome, out of place, vulnerable, and confused. Think of a time where your identity was stripped from you. When you lost the single thing that gave you hope, purpose, and made sense of your life. Where everything you once thought your life would be, suddenly wasn’t. I know it’s a scary place to go back to – no one likes revelling in their most uncomfortable moments, but for me, just take a second and breathe, and remember when life violated you on a primal level.

You got it?

That’s what life as a Mother with no living children feels like. Every. Single. Day.

I like the author’s softball analogy. Too often I feel stuck in the fielders’ position, away from the action.

Don’t get me wrong – I have many wonderful, kind, sensitive friends, both in real life and on social media. You all remember Hugo, mention his name regularly, and doing that give invaluable reassurance that he will never be forgotten. I am grateful to and appreciate every single one of you.

Thankfully, very few of you understand, and I mean first hand, how it feels to lose a child.

Even fewer know how it feels to lose your only child.

To be a parent with no child to care for. No living child to bestow so much love on. A house that is too quiet. A home bereft of toys and baby paraphernalia.

As I have mentioned in similar posts, there is no better or worse with baby and child loss. There are no points to be allocated, there is no ranking system.

Me and Hugo

I miss – without ever having truly experienced it – the camaraderie parents of living children share. Trading stories of sleepless nights, poonamis, tantrums. Proudly sharing the good stories, too.

It is why such posts, and sites such as Still Mothers are so valuable to me.

Hugo was born at 24 weeks, so I am a mother with little knowledge of the discomfort of carrying around a big bump. I missed feeling all the big kicks and turns of Hugo in my tummy. I missed waiting for 40 weeks, wondering what birth would be like.

I miss taking my baby home. Being a bewildered, scared new mother rather than a bewildered, scared bereaved mum.

This is something that I deal with most days. It’s life, I have to. It’s either that or hide under the duvet. A residual sense of guilt that I am alive when Hugo is not (and my own two weeks in hospital testament to how close I came to not being here myself) is motivation, too.

As the author of the post says about her daughter I fight for Hugo, defend his memory, and make sure I am the kind of woman he deserves to have as a mother.

It is why I work so hard on this blog, on Hugo’s Legacy. It is why I cannot help but take personally any incidence of feeling like Hugo has been ‘left out’ of something.

I’m not fishing for compliments. My readers leave kind comments, such as on this post. Many of the comments are humbling.

I don’t always feel like the woman described in these comments. Like yesterday, I was tired, so tired from grief, from fighting to show that Hugo matters, to feel that I am still a mother. I wanted it to all go away, to be better, to have my son back. I wanted to be sleep-deprived, and with toys all over the house.

Knowing that is impossible does not make me want it any less.

Having to acknowledge that is impossible can feel like a rude reminder, a painful poke in the ribs.

I am unlikely to ever say that these feelings are ‘ok’. They are not, because the reason those feelings are with me are very much not ok. That said, I am accepting, acknowledging that sometimes I am allowed to feel sorry for myself, to take time out.

That’s what I did yesterday. Retreated to the sofa with the cat. Avoided social media. Received kind support from lovely people.

Recharged the batteries, ready to survive another day.

Still an empty-armed mother. Still in a fielding position. But feeling better able to cope with that.